A letter to the President

Rheumatoid arthritis (RA) is an autoimmune disease that causes chronic inflammation of the joints. RA can also cause inflammation of the tissue around the joints, as well as in other organs in the body. Autoimmune diseases are illnesses that occur when the body’s tissues are mistakenly attacked by their own immune system. Patients with autoimmune diseases have antibodies in their blood that target their own body tissues, where they can be associated with inflammation. This disease is chronic and make simple day to day functions difficult if not impossible.

I have lived with this disease for 43 of my 44 years. Growing up I had at least one operation every summer. Some summers I had more then one surgery. Normal summer activities such as swimming were curtailed because of the presence of holding pins and casts. Over the years, I have had approximately 25 surgeries. Most of these have been on my hands and face. I have artificial wrist and knuckle joints, several fusions and have had total facial reconstruction. I am sure there will be more surgery in my future.

Although I have RA I consider myself an average middle class American. I am married with a teenager, Curtis, who will be attending college in a few years. My husband of 16 years, Brad, works at the National Weather Center and I work part time as a Customer Service Agent at Southwest Airlines. I graduated from the University of Kansas with a B.A. in History with concentrations in Music History had Harp. I was a Artist-in-Residence with the State of Oklahoma Arts Council. I enjoy costume history and am a glass artist

Coping with my disease has brought with it some recognition. I was chosen one of the National Arthritis Foundations Heroes overcoming Arthritis for the foundations 50th anniversary. That same year my story was included in the report that the National Arthritis Foundation submitted to Congress. Recently I was the Star of the Month for Southwest Airlines Spirit Magazine.

I am fortunate. Since I work part time for Southwest Airlines, I have good health insurance through my employer. My insurance is fully funded by Southwest Airlines who uses United HealthCare to administrate the policy. However, even with my insurance plan, our out of pocket cost for my care is over $10,000 a year. That figure would go up if I would have to have any surgery. Every year during the re-enrollment period I hold my breath for fear that my physicians and medications would not be included under my coverage.

But what would happen if I was unable to work? I would be forced to rely on my husbands healthcare plan. He works for the University of Oklahoma which utilizes the lowest bidder system. Currently his insurance is with Blue Cross and Blue Shield. If I had to use that carrier our out of pocket cost for my care would increase about $1500 a month. If I am unable to bring in any income, our out of pocket cost for an entire year to take up about half of my husbands gross salary. This figure would skyrocket if there is an catastrophic event. That is very very frightening. I cannot imagine what we would do. My husband makes too much for me to qualify for public assistance.

I am urging you to press forward towards Health Care reform. The system we have now is a very scary prospect for people like me. I am not asking for free hand outs. I want health care that will enable me to treat my disease without bankrupting my family. Recently I went to a town hall meeting. I was appalled at the level of misinformation and outright lies that a lot of people there believed. I was saddened that people have chosen to believe that latest email chain and media lies. I am concerned that their artificial anger will frighten the members of Congress and cause these members to de-rail much needed reform. I am also worried that there are members that know that something needs to be done and simply dont care.

The healthcare system we have now must be fixed. We must break the insurance company monopolies be allowing them to compete over state lines. Something need to be done to limit frivolous malpractice lawsuits. I also believe that allowing Pharmaceutical companies to advertise on TV is harmful and does little to help patients. Overall, THERE MUST BE A PUBLIC OPTION!

How we patent medications needs to be re-examined. For example, I take Embrel which is a very expensive medication for my RA. It has a price tag of over $1300 a month. Recently, it came to a point that it would be eligible to be a generic drug. At that point, the drug company re-patented the drug for psoriasis and the the wait to become generic begins again. This needs to be reformed.

Please not back down on this issue. This is too important There are too many Americans like myself and my family. If there is anything that I can do personally to aid the progress of Health Care Reform, please contact me. I have done much public speaking on the subject of my disability. Perhaps my story and I could add something to the debate at hand.